Enter stage 7?

Jeff86

I haven’t posted an update in quite a while. Probably because DW has been stable in late stage six for a very long time, and while she needs help with all ADLs she is fairly easy to care for. No aggression or anger and gladly accepts help.

So, even with as much as I know about disease progression and Stage 7, I’ve been lulled into a false sense of steady state stability. But as an economist in the 1930s observed, stability breeds instability.

On Saturday , DW was weak, with labored breathing, and coughing. I brought her to the ER, suspecting pneumonia, and sure enough that was the dx. She’s been in the hospital now for four days, on intravenous antibiotics and oxygen. Initially NPO but now on puréed food. Hopefully home tomorrow—off oxygen successfully today, but really weak when PT came to assess her. Unable to stand—hopefully a short term effect of being in bed for four days.

As I prepare to bring her home, I am not sure that she will be able to climb the stairs—all bedrooms are on the second (or third) floor. I am not sure she’ll be able to resume her normal diet—perhaps too much of a swallowing/aspirating food risk. I am not sure we’re in late stage six anymore.

Every stage has brought with it agonizing losses. I’m steeling myself for what’s next.

Pat6177

I’m sorry Jeff. Old age alone brings with it frailty. And add on the dementia. I’ve forgotten, is your DW on hospice? If not, perhaps time to have her evaluated. I’m sure the extra help would lessen the load on you a bit.

M1

So sorry Jeff. Agree with the hospice suggestion. Im sure it feels like quite the step however.

Joe C.

Jeff, Sorry to learn of your wife’s pneumonia and hospitalization. Hopefully she rebounds once you get her home. That was my experience when DW was in the hospital for a few days, once back at the MC she rebounded very quickly. Did PT recommend a short term rehab stay? The stairs will likely be a challenging though. Is there a spot you could set up a bed on the ground floor?

ButterflyWings

Jeff - Echoing everyone's comments. I am sorry you are facing this extra grievous situation, on top of our daily norm of consistent even if miniscule, loss. I can hear your sadness and heavy heart at this new normal.

We have also had the super long seeming tenure in late Stage 6. Then he suddenly progressed to all 7 descriptors, after 3-4 days in a traumatic hospital experience. Could do absolutely nothing for himself and we had to bring in the hospital bed, etc. as we were already on hospice but he had not been helpless, bedridden, and 2 person assist for everything until that moment. Shocking, scary, sad.

And no one wants to prolong late stage dementia for our LOs, but it was such a sudden and drastic change that I thought some might be due to being not allowed to move or do anything but lie in a bed with IV and all kinds of other craziness that he should not have been subjected to, in our case. But let me not digress.

I want to encourage you to seek whatever PT your DW is eligible for. Remember -- hospital delirium, side effects of new meds, and generally dealing with pneumonia can throw anyone for a loop. Much less our PWD LOs. DH fully rebounded to his pre-hospital physical status and resumed the slow roll in 6E, peeking at 7 but not immersed as he had been for a few days. Hospice has been a huge resource, with great people he benefits from visiting, monitoring his vitals and overall status, and the home delivery of all meds, supplies, medical equipment, etc. is a godsend.

White Crane

Jeff, I’m so sorry to hear this. My husband had aspiration pneumonia in March and was in the hospital for four days. It took a while, but he did returned to baseline after we got home. Physical therapy really helped. Sending prayers and virtual hugs.

A. Marie

People, this may be an unpopular opinion, but I'm going to put it out here anyway: If a PWD in late stage 6 or early stage 7 develops pneumonia, the kindest and most merciful thing to do for both the PWD and you may be to order comfort care only (no antibiotics). Ask yourself this tough question: What, exactly, are you keeping the PWD alive for? I had to ask myself this when my DH started going down in early June. and I am glad that I stuck to the comfort-care-only plan. Your mileage may vary, of course.

Ed1937

A. Marie, those thoughts may be unpopular with some people, but if it gives you any comfort, I fully agree with you. There's just not much to look forward to at that stage of the game that can't be won. In my book it's compassionate.

ButterflyWings

I don't disagree with A. Marie and Ed. But this is a highly personal choice for each family, we know.

That said, I have agreed to having DH treated with oral antibiotics within the last month, (at home) for suspected aspiration pneumonia. He was suffering and I don't want that. I do not expect him ever to be treated in a hospital again, but things do happen and I won't say "never" but hope no broken bones or anything like that ever occurs. That's the only reason I could see him going to ER or hospital ever again, but again -- who knows.

As we are staring Stage 7 in the face, should the pneumonia return or continue I would evaluate best options with the core team and decide together with his hospice nurse and doc, plus his primary med team. We all have the same philosophy about comfort care and least invasive approach to allowing him to depart with as little harm, pain, and fear or affronts to his dignity as possible.

However, I strongly believe in utilizing the services of a professional PT at whatever stage it might improve quality of life, even if temporarily. 12 visits in 6 weeks recently brought DH back from a sudden bedridden almost paraplegic state, and the goal was not to prolong his living with dementia or to pretend he is not terminal -- it was to help facilitate the most comfortable and safe state that we could...by helping him regain strength lost during a 3-4 day unplanned (an unapproved) ER + admit fiasco. I look forward to sharing the whole nightmare with you all soon, but for now will not hijack Jeff's thread further.

My input is just that every day brings its own decisions with multiple factors as we dementia caregivers know so well, and sometimes comfort care is best considered to exist on a spectrum.

Elshack

My DH is in Memory Care. Once he was on Hospice they said he no longer could have PT if he was in hospice. Not sure if this is the same in all states. We live in North Carolina.

ButterflyWings

Elshack - that is interesting and may be different for various states as you suggest, or maybe due to the insurer? DH has both VA health benefits and Medicare, and it was the hospice nurse lead that suggested I seek PT via the VA. His VA PCP agreed once they were sure I understood there were no guarantees that PT would help in Stage 6.

I advocated that we were just giving it a try to possibly restore his baseline from only 1 week prior and that made sense to the Dr. The referral came through within 72 hours and PT started immediately, with no billing issues whatsoever. And the PT was very successful as I shared above. We lucked out. Another week bedridden and 100% non-ambulatory, and we might still be a 2 person assist today. I am so grateful, and it was worth trying.

You may be right that the hospice Dr. could not have referred DH to PT, and don't know if Medicare would have paid for it, but since we have other coverage that did, it wasn't necessary.

Beachfan

Jeff, I am so sorry you have reached this point with your DW and that the dilemma of whether to treat, or not to treat, and how intensive said treatment should be has become such a huge part of your heartache. Looking back, I was blessed that all those decisions were taken out of my hands. An undetected internal bleed led to vomiting episodes, led to aspiration pneumonia and within 4 1/2 days, DH passed. There was no viable treatment offered; Hospice was on board for only 3 days at the end. Although DH was progressing steadily, he was still mobile (with help), eating well (fed), and sleeping comfortably. The sudden turn was shocking, frightening, and sad, but a blessing in disguise. I am thinking of you and praying for the best outcome for you and your DW. Stay strong.

Joydean

Jeff my thoughts and prayers are with you and your dw. We are leaving stage 6 and entering stage 7. It’s scary for me and I admit I have prayed if it’s God’s will he want prolong my husband’s suffering. All best wishes for you and your wife.

Jeff86

Appreciate greatly the comments/responses to my post.

DW came home from a five day hospital stay. She did not seem even slightly perturbed to be there. Back home, she does not appear to me to exhibit any further cognitive decline (not the biggest statement in the world). But physically she is, unsurprisingly, weak— walking with difficulty and very challenged by the stairs. Some mix of too weak, too frightened, and perhaps having forgotten how to negotiate stairs.

The hospital presented a transfer to rehab as an option, which I declined. Her care there would be appreciably less good than at home, and we will have home health services provide in-home PT. I am hopeful but not optimistic that DW will get strong enough to climb stairs again, and am prepared to give over the dining room to create a bedroom on the first floor.

At a follow up visit with the nurse practitioner, I asked about whether it’s time to seek hospice services, and she agreed to make a referral for a hospice evaluation.

To A. Marie’s very a propos point, I have wondered whether I did the right thing. We have a MOLST in place, including a number of interventions we as a family have agreed not to permit, but on the question of antibiotics their use is to be determined situationally. Truthfully, in the moment I gave no thought to this consideration. My DW was clearly experiencing distress, and antibiotics solved the distress. I talked afterwards with a physician friend who has experience with AD and he felt that administering antibiotics was compassionate care.

I don’t want to extend my DW’s life, and I dread for her, and for myself, the potential pain and suffering of stage 7. But I’m also not prepared to see her suffer, to ease (end) my journey.

Paris20

Jeff86, I’m truly sorry. My DH, diagnosed with AD in 2015, is probably closing in on stage 7 but he has been in stage 6 for ages. It is absolutely awful. He can still feed himself but he can no longer complete a sentence and he is totally incontinent. Since his paralyzing stroke in 2022 he has been in a skilled nursing facility. He has no idea what is happening to him, a perfect example of anasognosia. For him it’s a gift. For me it’s tough but now it’s actually comforting to know that he’s content.

One change for me is that I have changed what I wish for. Initially, I wanted his mild symptoms to last forever. I knew those were “the good times.” I treasured every moment. Now I’m not sure what I wish for but I don’t want him to suffer. I had very good experiences with Hospice for my parents. My mother died last month at the age of 101. The Hospice people know what to do when you’re at wits’ end. Nevertheless, I sometimes wish that my parents had, and my husband could have, the same beautiful sendoff that my beagles did. I know that thought might be offensive to some but when you see what dementia does to a loved one, the definition of compassion undergoes a transformation.

toolbeltexpert

Jeff I just want you to know you are in my prayers. I have these discussions in my mind about stage 7 as dw is moving threw 6? Your post is a reality of something we all must face sooner or later and all the discussion is a helpful thing at least for me as painful as it is.